Zoe, daughter of Jason and Shannin Strom-Henry, is a soon-to-be 12-year-old fifth-grader with pulmonary hypertension (PH). The Henry family lives just outside of Seattle, where they love to listen to loud music, watch their favorite shows, cook, bake and travel.

The Henry family’s PH journey started when Zoe was a baby. Twenty weeks into Shannin’s pregnancy, she learned Zoe had a congenital diaphragmatic hernia and a 50% chance of survival.

Thankfully, within a month after birth, doctors repaired Zoe’s hernia. But they soon discovered she had PH. At 3 months old, she was finally able to return home from the hospital.

Zoe’s PH has been an ongoing challenge for Shannin and Jason, but their efforts to make life easier for Zoe has kept them strong as a family. They love the support they get from their relatives in the area and appreciate Zoe’s medical teams.

“We so appreciate their willingness to make tough choices, to humor some question or idea that we have, and that they, like us, value her quality of life more than anything,” Shannin says.

These days, the family deals with other challenges. With the outbreak of COVID-19, the Henry family found themselves in a state of shock and fear.

Since then, Zoe has struggled with not being able to be around her friends and dealing with online school at home. So Shannin and Jason brainstorm about how to help her.

Throughout the pandemic, they have relied on Pulmonary Hypertension Association (PHA) resources. PHA’s Parents of Kids with PH web page helps them stay in touch with other families, and its pediatric support groups keeps Zoe connected with her friends.

Shannin advises other parents to reach out to other families of children with PH and become part of that community. “We all want our kids to thrive, and we are all our kids’ best advocates,” she says. “There is so much knowledge in this group of parents.”

PHA is grateful to Actelion Pharmaceuticals US for supporting the PHA Pediatric Program. Learn more about PHA’s pediatric resources.